Patient and caregiver perspectives on guideline adherence: the case of endocrine and bone health recommendations for Duchenne muscular dystrophy.
Brian DengerKathi KinnettAnn MartinSean GrantCourtney ArmstrongDmitry KhodyakovPublished in: Orphanet journal of rare diseases (2019)
This study used a novel approach to exploring patient and caregiver perspectives on factors that may affect guideline adherence. The six factors identified by DMD patients and caregivers are similar to the factors affecting provider adherence and are not limited to DMD. Understanding consistency between provider- and patient/caregiver-identified barriers to following guideline recommendations can lead to developing more successful interventions for increasing guideline adherence.
Keyphrases
- duchenne muscular dystrophy
- case report
- primary care
- healthcare
- ejection fraction
- muscular dystrophy
- newly diagnosed
- public health
- mental health
- clinical practice
- physical activity
- prognostic factors
- type diabetes
- palliative care
- glycemic control
- patient reported
- patient reported outcomes
- postmenopausal women
- weight loss
- adipose tissue